To Stanford and Back (CCSVI & me)

[shoshin]

I know some of you have been waiting for me to report on my experience at Stanford. I’m sorry about the delay and will try to make up for it now. While in California, I was Internet-less and we didn’t leave until early Sunday morning. It's taken me a little while to get caught up.

The short summary is that I’m very glad I went. They did not find any narrowing of the jugulars, but I did have abnormal functioning of the valves in both jugulars with some tapering of the veins above the valves and a big collateral vein going around the valve on right jugular. They used balloons on both sides so I ended up with no stents and I don’t have to be on blood thinners.

I do seem to be experiencing some benefits already (or else a bodacious placebo effect). I actually feel awake and alive. I was tired yesterday from getting up early to catch the plane, but it was an ordinary kind of tired. I feel like I have been living in a cave filled with shadows, fog, and cobwebs and I’ve just now come out to the bright, warm, colorful, sunshine-filled real world. Even if nothing else results from this procedure and even if it doesn’t last, this one thing alone is worth it.

Also, my hands and feet are warm! At least much of the time. I was outside in Palo Alto when it was in the fifties with no gloves and my hands were freaking warm! And even when they do get cold, my hands aren’t frozen like they were before. Plus it’s now mainly the fingers that get cold; my palms are still fairly warm. My temperature dysregulation also seems to have improved. I don’t feel super cold all the time.

I seem to have more endurance. I walked from one gate to the other when we changed planes (30-something to 50-something) and from the gate to baggage claim when we arrived and I didn’t feel like I was dying. Still slow and not progressing in a straight line, but I was very happy nonetheless to be able to walk so far without feeling like I had to flog myself into persevering. Freakier yet, I even felt like walking. When we got home from the airport (hour and a half drive), I had the energy (and my legs had the gumption) to start unpacking stuff and to move around, which never happens to me.

For those who really want to know, I have put the blow-by-blow in my journal at http://www.medhelp.org/user_journals/show/142508.

Sho

PS Medscape weighs in on CCSVI at http://www.medscape.com/viewarticle/713367

[shoshin]

Ess: I am trying to enjoy it without letting it go to my head too much. I'm trying to  background the fear of having everything crash and I won't really believe anything until it lasts a little longer than this has. Fingers crossed.

Lisa: Apparently, the dopplers that Dr. Zamboni is using for CCSVI are not so straightforward as all that and require a skilled, trained operator. Dr. Zamboni recommends looking at 50-100 normal people before looking at someone with MS. Then, he says, the difference will be obvious. The people at the U of Buffalo who are doing the correlational study had to be trained by Dr. Zamboni and his people. That's what I've heard anyway. If you figure it out, let us know. Hopefully, the skills will become a lot more widespread quickly as the dopplers are a lot cheaper and safer.

Unfortunately, Dr. Dake has abruptly stopped doing any more procedures until he starts a clinical trial early next year (http://www.thisisms.com/ftopict-9176.html). I seem to have been the last lucky open-label person, which just blows my mind.

If anyone is interested in the clinical trial, you should contact Dr. Dake's patient scheduler Alexandra (Alex) Duran Washburne. She is very helpful, but a little overwhelmed at the moment. Her contact info is on the second post (first number) on the thread at http://www.thisisms.com/ftopict-7645.html.

sho

[Guitar_grrrl]

Thank you, Sho for all that info.  I live about 35 minutes from Stanford, and work about 7 miles north of there.  I'm so tempted to go in and see for myself what the "Liberation"procedure could do for me.

As far as venous doppler studies are concerned, they can easily be done anywhere, and it is far cheaper than CT angio, and has no radiation involved.  I'm tempted to look at my own (I do cardiac ultrasound/doppler) as far up as I can see.

Thanks again, and I hope this has long lasting success for you.  I know you'll keep us posted.
Big hugs,
Lisa

[essdipity]

Sho, I'm so glad to hear that you are feeling very optimistic about the Stanford experience. I read your journal carefully, and found it extremely interesting. You are an outstanding observer and reporter, an ideal person to let us know all about it. Your reports live up to your usual standard of excellence in every regard.

I'll be most interested in your updates as time goes on---hope they continue to be so positive. Meanwhile, enjoy this new experience of recaptured well-being.

ess

[shoshin]

I went back to work today. I think this was my most productive day at work in eons. Usually, I spend a great deal of time zoning out and trying to motivate myself to focus. Thankfully, no one looks too closely at what I'm doing. Today I got through I number of things on my to-do list and my fingers were flying as I wrote more lucid emails than I've managed in a long time.

I also went up the three steps to our house without holding on to anything and without wobbling too much. Normally, two is my max without hands and even that involves more wobbling than this did. A small thing, but a victory for me. My energy level remains good, too.

I am haunted by the image of the woman my neuro described when I was starting the FTY720 trial. She was in the placebo arm of a Tysabri trial and during the trial she got out of her wheelchair and got her life back. Whatever caused that, it wasn't Tysbri. Part of me is just waiting for the other shoe to drop. Or the veins to re-collapse. Or something. The speed and degree of improvement I've experienced is beyond my most optimistic hopes and it's hard for me to believe it's real. And yet, my gut tells me that there's something substantial to this CCSVI theory and that all the people who've been treated are not just experiencing placebo effects. Even if it isn't the primary cause of MS, the venous insufficiency seems likely to have deleterious effects on the brain and spinal cord.

sho

[cainer]

  High five!!   this is great!   i am so glad it has helped  please keep us posted on how  u  

r  doing-   tick

[Karen99]

This is terrific news.  Good for you!!  I am keeping my fingers crossed that you continue to feel better. I believe you will.  :-)

[Quixotic1]

Wow!  This is all too major for me to consider it a ginormous placebo effect.  That kind of lessening of the fatigue would be wonderous!  We need very frequent updates on what you are noticing.

I can no longer make it through an airport, so I see what you are describing.  Thanks for being the forum guinea pig.

Quix

[supermum_ms]

I just read your journal, you were great to even get to the hospital, what a jouney you've had. Even after all that, the fact that your not wiped out is in itself an oddity, i'd be a puddle of goo on the floor, you'd have to scrape me up with a spatchela, i'm amazed you were still moving under your own steam.

I realise its early days but it sure would be wonderful if this ends up working for you, i have my fingers crossed that it is! I even think if the only improvement you get out of this is a lifting of fatigue, not necessarily needing it to be a huge improvement but just enough for you to get through the days, it would be priceless!

Cheers.........JJ

[sllowe]

So glad to hear how well you are feeling. Going to go read your journal now...

Nice to have you back,
shell

[shoshin]

Thanks, everybody! I am feeling hopeful.

Geekboy: No silly questions. The ballooning didn't hurt. None of it particularly hurt, although I gather that if you get stents, you can really tell when they open the stent. People who get stents also often have neck pain afterward.

You are conscious throughout the procedure. They give you something so you're sedated and not supposed to feel pain. I didn't feel that sleepy, but I did feel relaxed and not in pain so I guess the drugs worked.

They go in through the femoral vein at the groin. Exactly how they thread their way around is not completely clear to me.

sho

[Geekboy]

Wow! That's great news. Did the ballooning hurt? Are you conscious when they do it? Where do they go in to the vein? Sorry for all the silly questions but I'm very excited about this new treatment. I am so glad that you are feeling better and I hope it is just the beginning for you.

[Wobbly]

wow...for you to do this is courageous to me... good for you and I hope it continues to help with your symptoms.. and I hope it's something that will be studied and checked into.

I'm proud of you for going there and persuing this.. all the best.

take care and let us know how things go.. OK.. I'm curious as to how you feel...so stay online...

wobbly
dx

[Udkas]

I am so glad that all went well for you and that your trip was worth while.  To walk from 30 to 50 at an airport is amazing.  My airport only has two gate lounges (lol).

It is amazing how different we can feel both emotionally to life when we have more energy etc.

Glad that it has worked out.
Udkas.

[Mand125]

I have commented in your journal but thanks so much for letting us know how it all went.

Mand